PB2689: THE PSYCHOLOGICAL EXPERIENCE AND BURDEN OF BLOOD CANCER FOR ADULT PATIENTS: A SYSTEMATIC REVIEW AND META-SYNTHESIS
Authors: Priyanka Mehta, Gillian Murphy, Ella Graham-Rowe, Caroline Katzer, Konstantina Galani, Sam Wood
Journal: HemaSphere (2023)

Topic: 35. Quality of life and palliative care Background: Being diagnosed and living with blood cancer poses a complex psychosocial/emotional challenge for adult patients. Understanding the challenges and unmet needs is essential if we are to reduce the patient’s burden Aims: To identify and synthesize primary qualitative studies reporting the experiences, and psychosocial/emotional burden of adult patients diagnosed with blood cancer Methods: Embase and PsycINFO were searched for studies published in English between January 2002 and July 2022. The search identified 1723 papers, with 71 eligible studies. Data (i.e., participant quotations and interpretative summaries) were extracted and analyzed. Results: The systemic nature of blood cancers and wide range of associated symptoms could lead to protracted and delayed diagnoses. Patients felt distressed, anxious, and frustrated after repeated appointments with no satisfactory outcome or relief. Once diagnosed, patients reported wanting others to recognise and accommodate their struggles but could feel unseen and misunderstood as they believed others perceived their cancer as less significant compared to those with solid-tumor cancers. This sense of dismissal could negatively impact their personal and social identity. People diagnosed with blood cancer reported experiencing diverse challenges. Some reported feeling relatively well, especially in the early stages, which left them surprised and confused as they could not connect their experiences to their diagnosis. For others, the physical changes (e.g., to their skin) could make them feel self-conscious, embarrassed and not their own self. How patients perceived their current treatment could take many forms. For some, it was a ‘life-saver’ but for others it felt relentless, or like a trial-and-error exercise or ‘an experiment’. This experience could leave them feeling unsure of what to expect from their treatment, increasing their anxiety and distress. Patients on ‘watch and wait’ could experience confusion and disbelief when they were told that their cancer was treatable but not curable and at the same time their treatment would be delayed for as long as possible. This could leave them feeling disappointed and overlooked by their healthcare team. Patients reported experiencing great relief when treatment was complete, however, being discharged could feel like moving into unchartered territory with apprehension about leaving the security of follow up care. At post-treatment stage, there was a desire to focus on living, but the enduring fear of relapse could lead patients to feel anxious about every ache or pain they experienced. Patients likened their overall emotional experience of living with blood cancer to a rollercoaster with peaks relating to success in treatment and periods of remission, and troughs relating to diagnosis, recovery from treatment and side effects, and potential relapse. Summary/Conclusion: This review highlights the significant psychological burden that adult patients with blood cancer face throughout their care. It identifies patient reported unmet needs at the level of the individual (e.g., lack of perceived support); the clinician (e.g., lack of communication and clarity about treatment delays); the healthcare system (e.g., no clear route to diagnosis) and society (e.g., lack of public awareness). Whilst formal psychologist’s input throughout the patient’s journey would be ideal, it may not be practicable in most centres. Educating and raising awareness in clinicians to better understand and manage psychological issues, inculcated early in their training, could help improve patient experiences. Keywords: Patient, Systematic review